Cancer registries can be classified into three general types:

• Health care institutions registries: These registries maintain data on all patients diagnosed and/or treated for cancer at their facility. Health care facilities report cancer cases to the central or state cancer registry as required by law. UVM Health Cancer Registries are examples of this type of registry.
• Central registries: These registries are population-based and maintain data on all cancer patients within certain geographical areas. The Vermont and New York State Cancer Registries are this type of registry.
• Special purpose registries: These registries maintain data on a particular type of cancer, such as brain tumors.

This distinction ensures patients and providers the following benefits:

Patient benefits:

• Quality of care close to home provided by one network system
• Coordinated service locations and practitioners within one system
• Comprehensive care offering a more complete range of state-of-the-art services and equipment within one system
• Multidisciplinary team/facility approach to coordinate the best treatment options available
• Access to cancer-related education and support within one system
• Information about ongoing cancer clinical trials and new treatment options communicated throughout the network

Provider benefits:

• A model for organizing and managing your network to ensure multidisciplinary, integrated, and comprehensive oncology services throughout the system
• Sharing of cancer-related information on patients seen within the network for all those involved in providing cancer care
• Recognition by other national health care organizations, including the Joint Commission, as having established performance measures for high-quality cancer care across the network continuum
• Monitoring of cancer patient outcomes using the network data collected by the cancer registry from all facilities involved
• Information about ongoing cancer clinical trials and new treatment options communicated throughout the network
• Free marketing and national public exposure by partnering with the CoC and American Cancer Society (ACS) in the Facility Information Profile System (FIPS) -- an information sharing effort of resources and services and cancer experience for the ACS National Call Center and Web site. One record will exist that will encompass all network resources for public viewing.
• Participation in the National Cancer Data Base (NCDB) -- a nationwide oncology outcomes database. Pooled data from all facilities will be displayed as one network program
• Access to Benchmark Reports containing national aggregate data and network-specific data to assess patterns of care and outcomes relative to national norms and to monitor and improve care across the continuum
• Participation in Special Studies for the ad hoc collection of specific data to address important cancer problems
• Marketing tools provided to communicate CoC-approval and its benefits to the community

The National Cancer Act of 1971 mandated cancer care facilities to collect, analyze and disseminate data for use in the prevention and treatment of cancer. Then in October 1992, Congress enacted Public Law 102-515 establishing a National Program of Cancer Registries for the following purposes:

• Local, state, and national cancer agencies use registry data in defined areas to make important public health decisions.
• Cancer registries are valuable research tools for those interested in the etiology, diagnosis, and treatment of cancer.
• Fundamental research on the epidemiology of cancer is initiated using the accumulated data.
• Lifetime follow-up is an important aspect of the cancer registry. Current patient follow-up serves as a reminder to physicians and patients to schedule regular clinical examinations and provides accurate survival information.

• Demographic information: Age, gender, race/ethnicity, birthplace and geographic location
• Medical history: Physical findings, screening information, occupation and any history of previous cancer
• Diagnostic findings: Types, dates and results of procedures used to diagnose cancer
• Cancer information: Primary site, cell type and extent of disease
• Cancer therapy: Surgery, radiation therapy, chemotherapy, hormone or immunotherapy
• Follow-up: Annual information concerning treatment, recurrence and patient status is updated to maintain accurate surveillance information

• Evaluate patient outcomes, quality of life and satisfaction issue and implement procedures for improvement
• Provide follow-up information for cancer surveillance
• Calculate survival rates by various data items
• Provide information for cancer program activities
• Analyze referral patterns
• Allocate resources at the health care facility, the community, region or state level
• Develop educational programs
• Report cancer incidence as required under state law
• Evaluate efficacy of treatment modalities

Confidentiality of patient identifying information and related medical data is strictly maintained in accordance with the Health Insurance Portability and Accountability Act (HIPAA). Aggregate data are analyzed and published without patient identifiers.

• Continue annual life-long follow-up with your health care provider so information can be obtained on:
  • Residual disease or its spread
  • Recurrences or additional malignancies
  • Subsequent treatment
• Encourage other cancer survivors to also obtain follow-up